2026 World Haemophilia Day

What if improving diagnosis could change thousands of lives?
What can we learn from haemophilia to better identify and manage von Willebrand disease?
And how can we close the gap for patients who remain undiagnosed today?

✅ On World Haemophilia Day, we highlight the importance of diagnosis — and the inspiring progress made in haemophilia care, which continues to serve as a model for improving awareness, diagnosis and management of von Willebrand disease.

🎙️ Professor Erik Berntorp shares his expert perspective and invites us to use this 100-year milestone as a catalyst to build hope together.

👉 A powerful reminder that, despite a century of progress, much remains to be done — particularly in raising awareness among healthcare professionals: “𝒗𝒐𝒏 𝑾𝒊𝒍𝒍𝒆𝒃𝒓𝒂𝒏𝒅 𝒅𝒊𝒔𝒆𝒂𝒔𝒆 𝒉𝒂𝒔 𝒍𝒐𝒏𝒈 𝒃𝒆𝒆𝒏 𝒊𝒏 𝒕𝒉𝒆 𝒔𝒉𝒂𝒅𝒐𝒘 𝒐𝒇 𝒉𝒂𝒆𝒎𝒐𝒑𝒉𝒊𝒍𝒊𝒂. 𝑰𝒕𝒔 💯 𝒕𝒉 𝒂𝒏𝒏𝒊𝒗𝒆𝒓𝒔𝒂𝒓𝒚 𝒊𝒔 𝒕𝒉𝒆 𝒎𝒐𝒎𝒆𝒏𝒕 𝒕𝒐 𝒃𝒓𝒊𝒏𝒈 𝒊𝒕 𝒊𝒏𝒕𝒐 𝒕𝒉𝒆 𝒔𝒑𝒐𝒕𝒍𝒊𝒈𝒉𝒕 𝒂𝒏𝒅 𝒓𝒂𝒊𝒔𝒆 𝒕𝒉𝒆 𝒂𝒘𝒂𝒓𝒆𝒏𝒆𝒔𝒔 𝒊𝒕 𝒅𝒆𝒔𝒆𝒓𝒗𝒆𝒔.”

📖 Discover more insights in the full interview.

What would you consider as the key milestones in the understanding of the disease over the past 100 years?

Erik Berntorp (EB): A major milestone was the discovery that von Willebrand disease is caused by a  deficiency of a blood protein — the von Willebrand factor — and that it is distinct from haemophilia and other platelet disorders. The emergence of molecular genetics in the 1980s further revealed the complexity of the disease and its different subtypes, improving diagnosis, treatment and prognosis. Today, we understand that diagnosed patients represent only the tip of the iceberg, making awareness a crucial step forward.

How have advances in diagnosis transformed identification and management?

EB: Diagnostic tools now allow us to assess both the quantity and quality of the von Willebrand factor, enabling better differentiation between subtypes. In terms of management, the introduction of desmopressin in the 1970s and factor concentrates has significantly improved patient care.

What challenges remain in diagnosis, care and access?

EB: Centralising care, as achieved in haemophilia, remains a key challenge. For mild forms – the majority of cases – promoting bleeding assessment tools is essential to support earlier diagnosis. However, awareness remains insufficient, and patient registries are still lacking.

How can collaboration further advance the field? 

EB: Collaboration between clinicians, researchers and industry is essential to drive awareness — both in society and across healthcare systems. Many healthcare professionals are still not sufficiently aware
of the disease, but targeted initiatives have proven that progress is possible.

What improvements have patients experienced?

EB: Prophylaxis represents a major step forward. It helps prevent joint damage, reduces bleeding episodes and decreases hospitalisations. Its continued development will be key to improving long-term outcomes.

What does “Building Hope Together” mean to you? 

EB: It means bringing together all stakeholders — healthcare professionals, industry and patient organisations — to strengthen awareness and improve patient outcomes. This collective effort can represent a major step forward.

Why is awareness still so important today? 

EB: Many patients with mild forms remain undiagnosed and may not realise their symptoms are abnormal.
If we look at the epidemiology of this condition and compare the number of cases recorded by specialist centres with the general population, there is still a lot of work to be done.

What message would you like to share today? 

EB: Von Willebrand disease should be given the same priority as haemophilia, building on its care model.
For patients and families, the message is that the disease is now far better understood than before.